A note from Kat: One of the things I wanted to do with this blog was feature short interviews with real people who have real life insight into dementia. It’s easy to post news stories and talk about my own tale, but to actually get useful information from folks who’ve walked down this very dark and lonely path is invaluable. A true resource, and I thank everyone who participates for their time and honest words.
An interview with Wendy Panken, LCSW Manager Family Caregiver Support Group Program with The Alzheimer’s Association, New York City Chapter.
Wendy, what is the first thing you should do after receiving a diagnosis from your parent’s doctor?
I think the first thing to do is to call a chapter of the Alzheimer’s Association. It really has the best information, and even more than the best of information, the people who work at the chapters across the country often have been caregivers, so they’re very empathic. I would also say to reach out to family members who you feel you have a good relationship with. Expect it to take awhile to come to terms with a diagnosis like this.
How shocking is it to receive this kind of diagnosis as a younger caregiver vs. as an older caregiver?
The diagnosis is shocking even when you’re older, but it’s somewhat easier to come to terms with. Life is different in your 40’s, 50’s, and 60’s versus when you’re in your 20’s or 30’s. Still, loss is painful whatever age you are… But when you’re in your early 20’s, you’re looking to make a life for yourself; you might be involved with family, but to have to go back into your family is very difficult at that age. It’s a little easier in your 40’s or 50’s when you’ve established your own life. The 20’s, in our culture, is a time to explore the world and not to have to have to worry about parents or family.
You know, for me joining a support group was a huge thing. I didn’t want to rehash everything, it just seemed depressing. That said, what are the benefits of finding and joining a support group?
To me, forming relationships with other people who are going through the same thing and getting that kind of support from people who know what it is you are experiencing from the insides of it, isn’t depressing. I think we gain strength when we share our fears with each other—being honest about how scary this diagnosis is and how confusing being with our parents who have AD is a great relief. I think that kind of honesty helps us to do what we know we need to do as caregivers.
Kat’s note: Although I was reluctant at first to fully participate in my support group, which is moderated by Wendy, I have really embraced the group and am grateful to the members.